Belle Update: July 25

She wore socks for the first time today 😃

Let's keep those tiny feet warm! Our room can get slightly cool from time to time, and Bella doesn't always enjoy being bundled. Especially in the middle of the night. She'll protest while she's asleep, and then proceed to kick the blanket off. Daddy covers her legs, and she pushes it right back. And around and around we go. 

She's just a peach 💜

Belle's been an absolute darling the last few days. She has slept better during the night, and has been awake for decent portions of the day. She's back on schedule.

She has very quick naps during the day, just like her mom and dad. All three of us are now professional power nappers.

Belle's biggest problem lately is her tummy. She's bothered a lot by her feeds. It's always sort of been an issue, but now it's coming to the forefront. 

She hasn't been pooping very much either, and the staff believe it's likely the main reason why she hasn't been taking her bottle. She's backed up, and doesn't feel that hunger and drive for food. 

An occupational therapist gave us some more pointers today, and Belle took nearly half of the bottle from her. We certainly can't complain about that! She took 20mL from Kiera later in the evening as well. 

We know Arabella has the right skills, but her stomach just needs to catch up.

She simply needs more time. It's a lot of volume to take in. Her stomach runs out of space towards the end of the feed. She'll reflux, and sometimes spit-up. The extra milk fortifiers make her uncomfortable, too. 

All of these things seem to play a major role in the bottle feeding dilemma. 

The staff decided to give her some laxatives over the last few days, but we haven't noticed a huge change yet. 

We have really nothing major to complain about, though. Arabella's a pint sized powerhouse, and she continues to make great strides forward. 

If she needs more time, so be it. We're in no rush. Belle controls the tempo of the game.

Skin to skin with mommy (9 days old)

Look what time has done for her so far. We can certainly live with time. Time is our friend, after all.  

Middle of the night

Belle has a lot of cute outfits, and it's all thanks to you guys. She received so many clothes. Kiera and I remember exactly who gave her which ones, too. We never forget! Again, thank you guys so much.

The nurses are absolutely in love with Arabella's wardrobe (or as we all call it, her walk-in closet). We keep all her clothes, blankets, and accessories stored neatly in bins under her crib. 

Lots and lots of bins 😄

We might need a moving truck when we're finally discharged. This girl is treated like royalty.

Princess Arabella...it sounds fitting 😊

We still don't know when we'll be sent home. The staff is busy trying to sort everything out. We might be weeks away, but it's hard to say for sure. 

There are many follow-up tests and scans that need to happen. Everything takes time. 

In the meantime, we'll continue doing what we're doing. We're very focused, but living at the hospital has it's own advantages and disadvantages. 

Kiera and I have a decent schedule in place to ensure that one of us are always watching Arabella closely. We work shifts, and it seems to work for us. It's literally 24 hour surveillance, because the nurses here aren't available like they were in the NICU. 

It's impossible for both of us to sleep at the same time anyway. There's so much going on some nights that we would never be able to sleep through it, even if we tried!

One person always has to be awake.

Belle's alarms go off in the middle of the night. If her heart-rate climbs higher than 180 bpm, or if her oxygen saturation falls too low, the beeps and dings ensue. We're both forced to wake up and check on her. You can't ignore it. Every piece of equipment seems to have a loud tone.

The solution? Ear plugs. 

The person sleeping has to wear them and must concentrate on getting quality rest. In turn, the other person takes care of Belle and is 100% committed. 

Things happen in the middle of the night sometimes. Instead of both of us being woken up, the person sleeping can rest easier knowing that the other is awake and focused on Arabella. It means a sounder, deeper sleep.

"Struggle isn't fun, but it's an opportunity to be brave."

Tonight was a perfect example of why one person always needs to be available. During her 3am feed I noticed a leak in her feeding tube. The tube was damaged, milk was gushing out, and the sheets were soaked. I called the nurses and we got to work.

Tube insertion is always an uncomfortable procedure for any baby. 

Arabella's a trooper. She got over it quickly. She received a fresh feeding tube, I changed her linens, and then it was back to bed for the little lady.

Sweet dreams 💙

Sunday funnies

Bundled after bath time. 

I think the bath is dad's most cherished thing to do with Belle 💜

A quick snapshot of Arabella without her gear 😍. We re-taped her cannula today, and replaced her feeding tube with a slightly thinner one. 

Kiera and I think that the thinner feeding tube might help get her back on track with bottle feeding. Hopefully it will mean less gagging and reflux. 

The most Belle took today was 15mL, but it's much better than the last few days. Mom and dad have to be detectives. We're always on the case. 

Can't forget about the burp!

Anyone that meets her for the first time instantly notices how much eye contact she gives them. 

Before bath time we usually do the typical weight and various measurements. Arabella has a nicely shaped head (so they say), which isn't always the case with some preemies. 

When preemies are born their bones are very pliable, and they obviously end up spending a lot of time on their back and sides (when they should still be in the womb!) Apparently it's called 'preemie head', and in extreme cases a helmet might be needed to help reshape the head. 

There are a million things that Arabella was fortunate enough to have dodged. It's insane to think about sometimes. 

Touch me, hold me, just be with me. 

There's always time for a quick fashion show before bed 😊

And of course, some tummy time to help strengthen all those neck muscles. She's getting so strong lately!

Sometimes mom and dad are all business. We want to help her grow and develop as best as we can, but we never forget to laugh and have fun. 

Mommy got some great Snapchat photos today that made me laugh out loud 😂

Boy, I sure love my girls. I'm so very blessed to have them in my life.

Helping hands

Belle got a new soother. The plush hippo comes attached, and it helps her keep the soos in her mouth. Kind of 😁

Just another weekend with mom and dad. Man, it feels good being so close to her.

We make sure to give her time off her back and alternate her positions. Belle usually enjoys laying on her side, but only if she's in the mood. 

She's quick to tell us if she doesn't like something 😊

In the NICU we had bean bags to keep Arabella snug in certain positions. We couldn't take them with us to the new unit, so now we roll up a few blankets to keep her somewhat in place. 

We give her more time on her tummy. We pick her up more often, too.

We hold her up and walk around the crib. We go as far as the tubes and wires allow. 

Sometimes we'll even let her watch a few minutes of cartoons.

Do you think she likes it? 😅  She's mesmerized huh?

I'm not going to lie to you guys. We still go through some very anxious and frustrating moments. Sometimes you just want to cry for no specific reason. You get a little sad. It's usually very brief but it's never any fun. Being in this environment takes its toll on you.

That's when you need to take a break. Go for a walk, get some fresh air, escape to the gym or to the park, take a nap or go get a coffee. We encourage each other to take breaks. You come back so much stronger and more willing to take on the rest of the day.

It's a lot easier with both of us here. We can always alternate or offer each other a helping hand. 

It's hard when only one of us is here. Sometimes it's not even about the physical help. We find we need the other person here to share in the emotional and mental anguish. It's overwhelming for one person. 

I have so much respect for parents doing this alone. I don't know how they do it. All single parents out there, really. In the NICU or not, single parents are true heroes walking among us. 

Belle Update: July 21

She may be little, but she's fierce.

Belle continues to fight her tubes. The prongs irritate her nostrils, and sometimes she rips out the entire apparatus. We're forced to keep her mittens on her hands at all times, otherwise she has too good of a grip.

We kindly asked the staff today to re-tape her cannula using stronger tape. Arabella's too feisty for her own good.

She just wants to break free, and mom and dad do too. "Soon Bella, soon", we tell her.

For the last few days, Arabella was in isolation (due to her odd fever a few days ago). Every member of the staff was forced to put on a mask and gown before entering her room. Thankfully, isolation was lifted this morning. Her blood and urine cultures all came back negative. 

Very strange. Perhaps the vaccines had something to do with the spike in her fever. 

We continue to work on her bottle feeding, but the last few days have been rather difficult. Sometimes Bella will take 5mL, other times she will take 20mL, but she hasn't taken more than 20mL in a while. 

Currently she's fed 62mL every 3 hours. It's a lot of food for a tiny Tinkerbell. The milk is fortified with lots of extra stuff, too. Often times it makes her gassy and uncomfortable, which is unfortunate, but the fortification ensures she's getting plenty of calories. Bella requires all the calories she can get. She's playing catch-up, of course. 

An occupational therapist told us not to worry too much about the amount she's taking by bottle. Even the smallest amount is better than nothing. Her sucking ability is very good, and that's obviously very important. The trick is not to force her, otherwise she will start to develop an aversion to bottle feeding. 

Her reflux is constantly bothering her too. It's an ongoing battle. 

So we'll let Belle go at her own pace. If she doesn't want her bottle, the rest goes into a large syringe and we program the machine to slowly release the milk via her feeding tube. 

Her meds and supplements are slowly starting to decrease. Those are her 9 o'clock syringes. We usually push them through in the middle of her feed. Her potassium supplement can especially make her feel nauseous if there's nothing else in her stomach.

Oh, the things we've learned. 

We're really glad to have our private room. It's liberating. It's a lot more work, but it's one step closer to being home. We need to be ready for discharge anyway, and we're proving to everyone that we can handle it.

Sending us home with feeding tubes? No problem. Sending us home with oxygen tanks? No problem. Sending us home with meds, supplements, milk fortifiers? No problem at all. 

We'll do it all if we have to. Please just let us take our little girl home. 

Belle Update: July 20

Daddy made her bed this morning. It's a trick we picked up from the NICU. A few rolled up towels make for a great nest, and it keeps her from rolling around, or sliding too far down the bed.

Belle likes to pretend that she's a worm. Without boundaries she'll be at the other end of the crib within a few minutes. We've watched her do it over and over again. 

She makes us laugh constantly. What a funny girl.

Above Arabella's crib we taped a piece of paper with a list of things about her. For instance, "I have fractures that are still healing, be extra gentle with me. Please don't lift my feet or thighs for diaper changes, lift me from my hips instead." 

We're always extra careful with her due to her fragile bones, and we expect all of her nurses to do the same.

Mom and dad are her full time nurses now. We do everything these days. We even know some of the equipment better than most nurses up here in Pediatrics. 

We've learned so much from our time in the NICU. 

Time to feed Belle via feeding tube? No problem. We got this. Once you do it a few times it's easy. 

Last night was our first entire night with her. Kiera and I decided to work shifts. One person is always with her while the other one sleeps. 

In the NICU, parents are never allowed to sleep bedside, but in Pediatrics those rules don't apply. 

Dad works the night shift. Dad's always up late blogging anyway.

Last night I watched her fuss and wiggle until 7am. She would squirm, try to pull out her tubes for a bit, and then go right back to sleep. Whether asleep or awake, this girl always wants to rip out those tubes. Every few minutes she was stirring.

Tonight it's very much the same. Wiggle wiggle, make some noise, and back to sleep. As I was writing this last sentance she pulled out her oxygen tubes and I had to add extra tape to hold it in place. Belle wants everyone to know how smart she is.

A picture of our sleeping area. It's not big or glamorous, but we're happy being so close to Arabella. And that's all that matters.

Our own space

Yesterday was a tough day for all of us. 

It was Belle's first day in the Pediatric unit. It was a change of scenery, filled with new staff and different ways of doing things. On top of that, Belle was irritable. She wasn't acting like her usual self.

"What's going on?" we thought to ourselves. We felt lost, helpless and frustrated. 

The nurses in this unit do things differently, they don't know all the NICU tricks, and they don't know Arabella, but we have to adapt. It's a big shift for all of us. 

After spending 5 months in the NICU, we got used to certain things. We also got used to certain people. It meant trust and comfort, and it felt like we lost a lot of that yesterday. 

Who knew we would actually miss the NICU? The cool winds of change can be uncomfortable. 

Before being admitted to Pediatrics, we were told that a nurse would always be present in Arabella's new room. So when Belle was put into a large room shared with 3 other children, we thought she (and the other kids) would be under constant observation. 

But that's not exactly the case. There isn't always someone in the room. The nurses have the kids' vitals displayed on their cell phones, they can receive emergency notifications, but they only come around periodically. 

We were spoiled in the NICU. There was always a nurse in the room, and that eased our minds.

We felt uncomfortable leaving Arabella last night. There was no real space to spend the night there, either. 

Obviously, Belle is in good hands at the hospital, but knowing there isn't someone present in her room at all times was worrisome. 

Kiera and I went home, talked about it, and decided that we had to do something different. We needed a private room, and that's exactly what we got today. 

A private room happened to be available (free of charge) with enough space for at least one person to sleep comfortably, and the staff had no issue moving us across the hall. 

We knew that we needed to be there for Arabella. As parents, it was time to step up. No one will give her the type of attention that mom and dad give her. Sleeping arrangements will be tricky, but we'll figure it out. 

Sleep? Who needs sleep? 😁

She needs us right now.

She had a tough day again today. She spiked a fever and the staff suspect something is going on with her. They think it's either a cold, a bug in her stomach, or an infection, so we'll see what the blood and urine cultures show in the next day or two. 

There's never a dull moment around here, that's for sure.